UK’s Summary Care Record: miracle turnaround

by Charles Wright on November 2, 2011

Critics of our PCEHR system might like to read about the shift in attitudes to the NHS’s Summary Care Record detailed by a healthcare columnist for The Guardian.

Initially attacked by security expert Dr Ross Anderson, at the time a member of Cambridge University’s Security Group, then shredded by Professor Trisha Greenhalgh, and targeted for abandonment by government ministers – “with the government, academia and the BMA against it, the SCR was clearly doomed” – it is now regarded as being important for healthcare, and is being described by 70 per cent. of after-hours GPs as enhancing patient safety.

Columnist Dick Vinegar describes the fact that 9 million records have already been uploaded and England’s Department of Health is encouraging NHS organisations to accelerate creation of SCRs as “a miracle”.

Exploring reasons for the U-turn, Vinegar writes: “The cynics will say that the SCR project has cost so much that it has to be continued. Another version is that the nay-sayers have not come up with an alternative to the SCR – as nay-sayers habitually fail to do – and so ministers have decided to go with the devil that has already been paid for, rather than launch a whole new scheme from scratch.

“Another possible reason for the U-turn, although unlikely, is that one of the ministers, being a layman and therefore unaffected by medical dogma, and perhaps having elderly and confused parents, might have realised that they might find themselves in front of a doctor who does not have access to their records. A layman would realise that a doctor without accessible patient records is flying by the seat of his/her pants/knickers. Such a layman might want something safer for their parents, like a remote summary care record. And that layman/minister might have persuaded the department to persevere with the SCR. This explanation is a bit far-fetched. If anybody has a better explanation of the U-Turn, please let me know.

“Perhaps more likely, the DH may have been influenced by long-term patients’ groups.”

That support seems to be growing. First a report by the Muscular Dystrophy Campaign precommended patients consider adding important information about their conditions to their Summary Care Record to improve their experience of hospital care.

That led to Health Minister Simon Burns declaring: “I am very pleased to support the Muscular Dystrophy Campaign in their drive to improve care for their members and welcome their recognition that the Summary Care Record can play a useful role. Their report has shown just how crucial it can be for a patient’s care that clinicians have the right information at the right time, especially when treating conditions they may not see very often.

“With the Summary Care Record, patients are very much in the driving seat. They can decide, in discussion with their clinicians, what extra information, over and above core data about medications and allergies, they may want to share with those treating them. This could make all the difference in replicating more widely the examples of good quality care the Muscular Dystrophy Campaign have also highlighted.”

Since then, Mencap, Asthma UK, Diabetes UK and the British Lung Foundation have begun looking to raise awareness among their members about how the record could benefit patients when they are being treated by doctors and nurses in an emergency who may unfamiliar with their particular condition.

Neil Churchill, chief executive of Asthma UK, has pointed out that “patients with asthma can have long and detailed medical histories and it is unrealistic to expect them to repeat these whilst they are struggling to breathe”.

David Congdon of Mencap declares that a patient record can tell a doctor how a patient communicates that he is in pain. Otherwise, an unfamiliar doctor would not have a clue.

The Guardian quotes Sir Bruce Keogh, medical director of the NHS, on the topic: “Patients with long-term conditions come into frequent contact with the NHS, often needing unplanned and emergency care from clinicians unfamiliar with them or their specialist condition. It cannot be right that some of these patients feel they have to carry around medication information on scraps of paper or are asked to accurately recall important health information when they are ill and vulnerable.”

“Exactly so,” writes Vinegar, “and not only patients with long-term debilitating diseases. In the last month I, a generally healthy but rather geriatric patient, have been asked twice by clinicians I did not know what medication I am taking. One was in the run up to a tooth extraction in a local hospital, and then by a physiotherapist. I can never remember the names of the five medications. Nor could my wife. I don’t – but perhaps I should – carry around scraps of paper reminding me, or wear a bracelet. I was tempted to say to the clinicians that my list of medications have been uploaded to the spine and they should access it there, but I knew that that would have caused blank faces and embarrassment.”

And all that work being done in the Wave One and Wave Two sites in Australia to make the records accessible seems to be justified by his GP’s comment that “despite the money spent on the SCR, there is no software available to access it”.

He writes that this is “not quite true”, but points out that “given the roller-coaster ride of the project, and opposition of the medical establishment, software vendors have been slow to develop SCR-interface software. If the DH and the healthcare industry wants to make the SCR a real success, it should get its finger out and develop the whole system, end to end”.

It’s fascinating that in Australia, too, health consumer groups have been highly supportive of the PCEHR.